For the freshly-diagnosed heart patient, the immediate and sudden change from “being well” to “recovering” cuts directly to the core of self-concept and self-esteem, according to Dr. Wayne Sotile. He offers a surprisingly familiar list of seven sudden changes commonly observed after a cardiac event. When thinking back on the new reality of my own early post-heart attack days, I was able to tick off his list, point by point. If this had been a midterm exam, in fact, I’d score a perfect 7/7. On his list of seven stressors that newbies often face, how many ring true for you, too?

strange physical symptoms that leave you feeling out of control of your own body

a flood of preoccupation with death and, sometimes, overwhelming fear of death

immediate awareness of a new set of worries about your future ability to resume normal activities and to adjust to any lingering physical effects of this diagnosis

sudden disruption of customary daily lifestyle, including participation in work, social and family activities

obsessive questioning about why this illness occurred, what might have been done to prevent it from happening, or what needs to be done now to prevent a recurrence

dependence on the unfamiliar and often confusing environments of hospitals and doctors’ offices and the people who work there

taking medications that often make you feel and act strangely

Did anybody else feel that coping with the list he’s describing is a full-time job? Even now, I feel exhausted just reading those items piled on top of one another, all in one place, while vividly recalling going through each one myself – sometimes all crashing down upon me at once! – especially in the early days/weeks/months of recuperation. Suddenly, nothing felt “normal” anymore, and everything in my life had changed overnight.

He describes the seven specific changes listed above as part of the “endless volley of stressors that are faced upon leaving the hospital and attempting to resume a normal day-to-day life”, including this ultimate dose of reality for anyone diagnosed with a chronic and progressive illness like heart disease:

“Rehabilitation is not an event with a clear beginning, middle and ending; rehabilitation is a process that begins with the onset of cardiac illness and lasts for the rest of your life.”

Welcome to the relentlessness that is chronic illness. This is how a chronic diagnosis differs from an acute illness.

It’s the gift none of us want to receive, yet the one that just keeps on giving. . .

It’s also why making smarter lifestyle choices after any cardiac event is so important – because having already survived one is in itself a significant risk factor for having another.

Our health care providers hope that the diagnosis of a chronic condition like heart disease will represent a potential wake-up call, or what they also call secondary prevention, therapeutic adherence, or even a teachable moment. Maybe now, they understandably assume, their patients will stop procrastinating in making all of those healthy lifestyle choices they’ve been meaning to adopt.

But just as so many of us learn while tackling New Year’s resolutions each January, making big changes can be challenging.

So just try adding to that challenge the physical and emotional fallout inherent in Dr. Sotile’s seven stressors that accompany a catastrophic diagnosis.

He’s not alone. In a study called Health Behavior Change Following Chronic Illness in Middle and Later Life, researchers found that the vast majority of those diagnosed with a new chronic condition had significant problems adopting healthy behaviours – even after learning about significant evidence that such changes will help them survive. (1)

The study assessed changes in smoking, alcohol use and exercise 2–14 years following diagnosis of heart disease, diabetes, cancer, stroke, or lung disease. Here’s what they found:

The biggest observed behaviour change was smoking: about 40% of the smokers quit. But that meant 60% of all smokers studied continued to smoke.

There were no significant increases in exercise for any of the patients in this study, no matter what their diagnosis.

Overall changes in alcohol consumption were small.

Researchers concluded that “intensive efforts are required to help initiate and maintain lifestyle improvements among this population.”

Perhaps these researchers should have simply consulted Dr. Victor Montori and his Mayo Clinic-based team working on the novel health care concept they call Minimally Disruptive Medicine. They have astutely identified the under-recognized reality that’s experienced by those living with the “burden of treatment“– especially among those diagnosed with two or more chronic illnesses. Sometimes, as Dr. Montori reminds us:

“A patient’s education level, literacy, state of depression, pain, fatigue, social connectivity and supports, financial status – all of these affect a patient’s capacity to do the work they’re expected to do. But this workload can simply exceed capacity to cope.”

I vividly remember my first evening at Mayo Clinic while attending the 7th annual WomenHeart Science & Leadership Symposium for Women With Heart Disease, about five months after surviving what doctors call the “widowmaker” heart attack.

That night, following our first (heart-healthy) dinner, about 45 women – every one of us living with heart disease – were asked to introduce ourselves to the rest of our group. One by one, each woman stood up, announced her name, and then recounted some variation of:

“I had three stents implanted after my first heart attack in 2002, then had my second heart attack in 2005 that resulted in two more stents, and then my next heart attack in 2006 that needed triple bypass surgery.”

After listening to the first dozen or so of these introductions, rattled off casually as if they weren’t the multiple catastrophic crises that they must have been at the time, I started to feel a wee bit queasy. I was stricken with a profound sense that life as I’d always known it might be suddenly over.

Is this what would happen to me? Wasn’t one ‘widowmaker’ heart attack enough, for Pete’s sake? I’m stopping at one big fat cardiac event, thank you very much!

But what I failed to grasp at the time was that heart disease is indeeda chronic and progressive disease. See also: The Cure Myth

How often do any of us living with that relentlessness of debilitating symptoms and drugs and worry and treatments and medical appointments and tests and hospitalizations and exhaustion dream longingly about life as it used to be, before we became patients? Before we had to think about living with a diagnosis? Before we forgot what it was like to just feel normal? See also:“To Just Be a Person, and Not a Patient Anymore”

For many of us, surviving a cardiac event means needing to somehow adapt to an avalanche of unfamiliar changes, both physical and emotional. These include the immediate new stressors on Dr. Sotile’s list above, but can also expand to include, as it did for me, no longer being able to continue working (along with all of the financial, social, and grief fallout that can accompany that imposed change). So when you consider that 80% of cardiovascular disease is considered preventable, you might wonder: why doesn’t everybody make changes earlier rather than waiting for a cardiac event to rock our world?

There is simply no downside, after all, to living life as if we are already at very high risk of developing heart disease. Yet most healthy people say they lack the time or the will to follow those cardioprotective recommendations, preferring to wait until we hear a catastrophic diagnosis first.

And as one of my wise readers once suggested:

“You either take time now, or you’ll have to make time later.”

.

(1) Newsom, J et al. Health Behavior Change Following Chronic Illness in Middle and Later Life. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences: (2012)67B (3):279–288October 9, 2011 doi:10.1093/geronb/gbr103

Q: What behaviour changes have you been advised to make since receiving a serious diagnosis?

You should also recommend to your young friend that Dr. Sotile’s book “Thriving With Heart Disease” is a must-read for the freshly diagnosed. All of his books are good, but “Thriving” was a lifesaver for me…

I have been reading the book, “Coronary Artery Disease In Women….What All Physicians Need to Know,” by Pamela Charney, MD. Maybe physicians will get a heads-up from such a book, but, all I see is yet additional fodder for physicians to use against women – to further confound their diagnoses and treatment, based on gender.

There is a chapter on what is termed “Vital Exhaustion.” “Vital exhaustion, a debilitated emotional and physical state characterized by fatigue, increased irritability, and feelings of demoralization…” There are tests doctors can give you to tell you what you already know, but they get paid for doing them. Ultimately, it all boils down to another label: “Depression.” This would then be addressed by a referral for psychiatric therapy.

All women who have read their medical records who haven’t, at some point, been given a psychiatric label, raise their hands, even if it’s the word, “Anxious” standing alone. Not “reasonably anxious.” All women who have been labeled and who have had a provider not make that the focus, yet done nothing other than to prescribe medication – if that, raise your hand (sic).

I, for one, can directly attribute 85% of my heart “condition” to physician observations and notes… to being treated as if I were either a lunatic, (hold that word, “treated”). I have demoralizing notes in general. My medical records, which, presumably, will be the sole ‘memoir’ of my life, paint a picture of personal failures. Failure to communicate. “Tangential.” Failure in having hyperlipidemia…. failure to have a fully-functioning heart… Let’s not forget, “divorced.” Or, “living alone.” They write record this stuff in perpetuity.

Meanwhile, what level of care is being given? Next to none. I had taken to bringing along my resume to be included along with my notes. If they’re judging me, or any woman, on the basis they are, in fact, judging us and not treating us, then I think we should offer up the rest of us. I know that if we were well-known, published novelists or whatever, that would make a difference. But mostly, we are “average,” in societal view. I never left them with the printed resume, incidentally, because it made me queasy, just thinking that I felt, no – that I was being treated – as though I had done something wrong, and defending myself would only play into the whole, rotten miasma of physician judgment. (In fact, one of my previous stints in the medical profession, creates an instantaneous barrier).

Vital exhaustion. Other cultures understand this, and, until western medicine fouled the cultures and practices around the world, people in other cultures not only respected that state, but worked to ensure that anyone suffering from soul-sickness would be cured of it through kindness, association, food, herbs, a hearty laugh.

For me, it is the increasingly rare hearty laugh, and doing things out of the “norm,” that heal my heart. But when you know you are vitally exhausted, it is very difficult to stay strong enough not to succumb to the labeling, the testing, the endless physical invasions, even while knowing where the “cure” truly lies. Without sufficient non-standard “treatment” for exhaustion of one’s vitality, for demoralization, without access to non-standard care, it’s a tougher road.

Thanks for your thoughtful perspective, Jane. I can’t tell if you’re thinking that the premise of “vital exhaustion” is valid or not. It sure makes sense to me! Depression is extremely common after surviving a cardiac event, but I also appreciate Sandra Pawula’s lovely essays on “sadness” – perhaps a more accurate descriptor of this post-cardiac symptom than “depression”, albeit not one you’ll find in your doctor’s copy of the DSM!

I never object to seeing terms like “living alone” on medical charts (not a judgement call if it reflects reality!) because what I am concerned about is how on earth patients can be discharged from hospital with a chronic and progressive diagnosis like heart disease yet not one staff person asks questions like: “Do you have anybody at home to help take care of you?” or “Is there anybody at home that YOU have to take care of?” Those questions are important ways to assess the whole person, not just the errant organ under medical investigation! As for the label “anxious“, my own observation is that there are very few circumstances in life more anxiety-provoking than being in the middle of a frickety-frackin’ heart attack! Here’s more on this, from a woman who fought successfully to have the word “anxiety” removed from her medical records!

Both my GP and my cardiologist recommended daily exercise, even just walking 30 minutes a day, and changes to diet. My GP went so far as to recommend the “Forks Over Knives” diet–vegan with no added fats, processed grains, or sugar. My cardiologist just said if I cut anything from my diet, cut sugar.

It’s horrible how I seem to crave the most what my docs most want me to give up. The urgent care physician who sent me to the Emergency Department to deal with my hypertensive crisis is the only one who suggested seeking professional help to help me deal with stress. After reading some of Dr. Ornish’s work on heart disease, I started guided meditation, and it’s made a world of difference. It’s put me in a better mindset to both handle stress and face diet and exercise with a better attitude.

Thanks so much Julie – personally, I really like the Mayo Clinic’s recommendation for some variation of the widely-studied heart-healthy Mediterranean diet (which does contain healthy fats – nuts, seeds, avocado, olive oils, etc along with LOTS of fruit/veggies, fatty fish like salmon, high-fibre grains, very little red meat, etc). I’m wary of any diet that suggests banning an entire category (like healthy fats, or wheat, or dairy – or even bacon!) And I’ve met both vegans and bacon-eaters with heart disease . . . Dr. Ornish is an example of a severely restricted diet that many heart patients find almost impossible to stick with, yet his recommendations for stress management and exercise are really useful (as you’ve already discovered with your guided meditation!) because chronic uncontrolled stress can severely limit our ability to make healthy food or exercise decisions in the first place!

The Forks over Knives diet is excellent. I followed it immediately following my heart attack and I have never felt or looked better. My cardiologist recommends it as well. I will tell you though, it is hard to be social and eat that way. Our society does not support it well!

I was already making lifestyle changes before my heart attack. So that was not a big deal. But the doctor is constantly telling me to reduce stress in my life. I usually laugh and ask him “so you are not going to charge me for this visit?”.

Being in my 30s, I am a single mom to a 16 year old and a 6 year old. And I have a lot of medical bills. So managing stress is the hardest thing in my life right now.

♥ For women living with heart disease, from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women's health advocate, heart attack survivor, blogger, author, speaker here on the west coast of Canada

♥ Information for the general public, heart patients or their family members, health professionals, and all students of the heart

the news

♥ The first WomenHeart Support Group program in Canada is being held at Royal Jubilee Hospital in Victoria, BC on the third Wednesday evening of each month. Any woman living with heart disease is invited to attend. For more info, email barbara (dot) field (at) viha (dot) ca

♥Free Virtual Support Groups offered by WomenHeart: The National Coalition for Women With Heart Disease, scheduled throughout each month on three specific topics: Heart Failure, Atrial Fibrillation or General Heart Disease in Women. Check the current schedule to sign up.